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Boys with scoliosis

My 14 year old son was found to have scoliosis last Feb ('03). His back was hurting so we went to our family doctor who thought it was just a muscle strain, but did xrays just to be sure. The doctor came back with his eyes popping out of his head and told us David had a "significant" curve in his spine. Sure enough, with his shirt off, we could just see his back wasn't normal. I felt so guilty that we hadn't caught it earlier, but I hadn't seen him without a shirt for a long time, at least not after he turned 12 or so. And the doctor hadn't done a full exam on him for several months. He assured me that it can progress rapidly, especially during a growth spurt. (My husband still makes noises about the fact that we didn't catch it sooner.) This was at the end of February '03. At that time David had a thoracic curve of 36 degrees and a compensatory lumbar curve of 26 degrees. (He also has a compensatory curve in the cervical area, but they say we can't do anything with that.)

We were referred to a local orthopedist who had David fitted for a Boston TLSO, to be worn 23 hours a day. He hasn't managed to come close to that at all. When he's tried to sleep in it, he takes it off in the middle of the night and throws it as far as he can. It presses on his abdomen so much it makes it difficult to eat - he has esophageal reflux anyway, and this makes it much worse. He's 5'6" now and weighs only 95 pounds, so eating is even more of an issue. He might have averaged 70 hours a week in the brace, during "good" weeks.

Upon his re-check in October, his curves had progressed to 45 degrees thoracic, 37 degrees lumbar. The local orthopedist referred us to an orthopedic hospital that specializes in children (0 - 18) 100 miles away. (I'm still a little wary of mentioning specific places right now.) The doctors there want to truly exhaust all non-surgical options before resorting to surgery, so they have fitted him with a "more aggressive" Boston TLSO. It will push on him even more and they said he has to get up to no less than 84 hours a week in the brace or it won't do anything. More than that would be better. He'll get the new brace a week after Thanksgiving. If he couldn't manage the "less aggressive" brace, how will he adjust to this one?

David doesn't like talking about his scoliosis very much, and dislikes it when it becomes evident to others that he is wearing a brace. "Man, what's up with your back? It's all messed up!" one of his friends shouted at school the other day. Then a teacher chastised him for getting out of a chair to pick up his pencil - she asked him why he couldn't just bend over to pick it up. He just mumbled "Because I can't" and she thought he was being smart-aleck. I recently sent an email to all of his teachers explaining a little bit about his absences recently (MRI's, xrays, orthosis fitting, trips to the out of town hospital). I didn't hear anything back from that teacher.

One thing that has become very evident is that most of the patients who do talk about their scoliosis, casually or as part of a support group, are girls. David thinks he's really weird because he has something that very few boys get, compared to girls. And another aspect of his being a boy with scoliosis is that his growth can continue for a very long time. He might be looking at wearing a brace for at least four, possibly six more years, unless they decide surgery is necessary sooner. In fact, I think that's his fear, that he'll go through the misery of wearing the brace for several years and still need surgery. The new orthopedist says boys do seem to have a more difficult time with bracing.

And David asks if he might still be able to go into the Air Force, in some capacity, with scoliosis, corrected or not.

I apologize for going on and on, but I would like to hear anything about teenage boys with scoliosis and how they have managed their treatment.

I can only imagine how your son feels, and how you feel helpless. As a parent, we want to make everything better for them. Beating yourself up over the fact that no one noticed his scoliosis before now isn't going to help anyone. It's only going to add to any anger any of you may be feeling.

I have 2 children with scoliosis - a daughter with adolescent idiopathic scoliosis and a son who was born with congenital scoliosis. My daughter was diagnosed just after her 12th birthday. At first, I, too, thought that I should have known to watch for a problem, after all, my son was then 3 years old and had been through lots of bracing and a fusion surgery already. But, I didn't. I also realized that the two children have totally unrelated situations with their spines. Something I had to make myself believe.

I'm glad to hear David will be seeing a pediatric orthopedist. Make sure the ortho specializes in spine malformations and scoliosis. Not all orthos understand the complexity of scoliosis.

Before he gets too frustrated with the brace issues, I think talking to a ped. ortho. who understands David's specific spine issues is a good idea. Make a list of questions (in order of priority in case the doc doesn't have time to answer all of your questions). It is so important to understand what the recommendations are, and how they apply to David's specific situation. There are generic treatments and we can all share our experiences, but you and David have unique circumstances that must be fully understood before you can move on with treatment. Surgery is frightening. Surgery is something that should be considered at great length and discussed with a trusted and competent surgeon.

And, as a matter of fact, my 8yr old, Braydon, was an Honorary Pilot for the Day at our local Air Force Base last month. After seeing the many people involved with the base and how it functions, I'm sure there will be something David could do to contribute to the service. They need lots of people and specialists to operate, not just pilots. Braydon would love to be a pilot (his favorite part of the day was "flying" on the F-16 simulator) but he's also very interested in "fixing" things... he would be a great airplane mechanic! My point is that it never hurts to ask.

I hope you find some answers and some peace in dealing with David's scoliosis. Please keep us posted about his progress.

Thank you, Carmell

Dear Carmell,

Thank you for your kind reply. I had read another post of yours in this board that detailed your own experiences, particularly those with your son, Braydon. It's so good and kind of you to "mentor" and share with us!

The referral to the specialist was one the best things that could have happened. We were sent to Texas Scottish Rite Hospital in Dallas and they are leaders in the treatment of scoliosis - and kids! It's a wonderful facility and I have great confidence in the doctors we met and their approach. David has a team taking care of him and we will always meet with the same team. The orthopedist here in our town that referred us to TSRH would have been fine, I think, if David's case didn't look likely to require surgery, but since it's very likely, I have much more confidence in this facility and their expertise in scoliosis treatment and surgery. His doctor at TSRH wants to give him every chance possible to delay, and just maybe avoid surgery, so that assures me, as well, knowing that he's not rushing into it. The doctor here had told us we were already at that point - surgery was next. I'm realistic, with David's curves already at the threshold (45, 37 degrees) and with several years of growth left, he has a minimal chance of avoiding surgery. But perhaps we can give him some growing time, let him fill out just a bit. That and maybe avoid disrupting his school year (freshman in high school - that's traumatic enough!).

I'll pass along that Air Force information and maybe do a little research and see if his back would in fact keep him out entirely (we had assumed it would). He likes fixing things, too (his room has VCR and telephone parts carpeting the floor at this moment!), and I suppose he can get his flight experience through his computer/X-box games!

David plays cello in his school orchestra and I found out last night that the famous cellist Yo-Yo Ma also had scoliosis and had surgery for it. I don't know how old he was when he had the surgery, but the article stated that before the surgery he was in so much pain he almost gave up the cello! I've spoken at length with David's orchestra teacher about his scoliosis so that he would understand when David had to adjust his sitting position or move in an unusual manner due to the brace (position being very important - they can get points counted off for posture issues). He's been very kind and compassionate and I'm grateful for that.

David's sister is a freshman in college and she came up (from Austin, about 240 miles away) for a short visit this weekend. I barely saw her, but she whisked David away to go watch movies wtih her and her friends. They had become very close before, and now I think she's really wanting to support him through this time of change and worry. I know it means a lot to him. When we go to TSRH for his January appointment (we go Dec. 3, too) she'll be on break and can go with us. I want her to be able to ask questions, too, and TSRH really encourages the whole family to be involved. She's very bright and analytical, so she will likely think of things we haven't thought of yet.

Thanks for indulging me here. I've taken advantage of your kindness and compassion, I'm afraid, but again, I do so appreciate just being able to talk about it with people who have been there/are there/are about there

Thanks for your kind words. I continue to post because I know all too well how isolated and alone parents and families feel when they are given a scoliosis diagnosis, especially in infants and young children.

I think letting David talk about his feelings, whenever he needs to helps. I also have found that letting teachers know about the potentially long term "issue", they are more willing to work with the student. They have to, it's a federal law. I also think that researching other "famous" people with scoliosis helps (teenagers especially) realize that having scoliosis doesn't have to be a prison sentence. There are amazing things people have done who have scoliosis.

Scoliosis is not the end of the world, but until he has the confidence he needs to emotionally deal with his own body, he'll need lots of encouragement. Braydon was born with a curved spine - he doesn't know any different. For him, it's not been an emotional adjustment - there was nothing to adjust to or from. He takes life in stride and most the time handles his hospital trips like another adventure or vacation. I think that makes a difference.

I look forward to your updates. I'm so glad you found a team of doctors who are willing to help David through his growing years and will be there for him emotionally and physically - that helps more than anything!

Hi! I am new to this site. My son is 13 years old. He was diagnosed with scoliosis in March 2003. Lumbar 35, thoracic 28
He was put in a boston brace in the middle of May, 2003.

I know what your son is going through: however, my son worked his hours up within a week and a half to 22 hours per day. He has asthma and I can tell you that this was very diffucult for him. He also has marfan's syndrome which is a connective tissue disorder. His doctor told me in the beginning that because of the marfan's syndrome he could get to the point that his brace would not hold his curves. We would have to take it one day at a time. He went for a follow-up appointment in August, 2003 and his curves had maintained the same degrees, but he had grown several inches and his doctor told me that his brace was getting too short. He told me to bring him back in November for his 3 month check-up. In November, when we went back for his check-up my son's curves had increased to 43 lumbar, not change on the top. He recommended another brace and told me however,, that Brandon could end up having surgery later. Brandon grew about 6 inches from May til November. He is now 5'11".

I know what you are going through because my is upset that his life has changed, all of his clothes have holes in them regardless of what we have done, and his curves have still increased.

He has not fudged on wearing his brace except for my Brother's wedding and a couple of days while we were on vacation in July.

There are no boys who post on this site; however, my son got up enough nerve and he has had only one reply. I think this is sad. My son would probably enjoy talking to your son.

Hello,
I feel for you and know every bit of what you are saying. Although I have a 14 year old daughter with scoliosis, She also DOES NOT like to talk about it. Her stepbrother has it too and had the surgery 10 years ago. He only had a single curve unlike my daughter that has a double. Today he is doing fine so far.
You might have seen my posts here or at another board. My daughter is at surgery level and is refusing it. They will not do it unless she cooperates for the most part. I can relate that your son doesnt wear the brace. My daughter was not braced because of the degree of her curves (50 and 40) at the time. They said because of that and her age that it wouldnt help. She is doing this alternative for now trying to lower the degrees some. If anything it might give her more time. Anyway, she is good at doing her treatments at night but never does it in the morning. Just like Im sure your son understands he should be wearing the brace all the time, she knows this too about her treatments but will not stick to it.
Her stepbrother had a brace and would do the same thing, take it off and throw it.
Do you think there is any chance that your son may talk to my daughter? I know she is a girl but they still seem to have a little in common. Let me know! My daughter will be xrayed next sat and we will know if what she has done has helped or if her curves have gotten worse. Im real nervous about it. Good luck to you and your son! Bonnie

I am a 27 year old man who was diagnosed with scoliosis when I was 7. I went through several types of braces and even something called a scolotron(it used electrodes to stimulate the back, has since been proved to be ineffective). I spent several years in what was called a modified Milwaukee brace. I eventually had a spinal fusion when I was 13 (in 1989, performed by Stephen Albanese). I can say that it was very hard as an active young boy to wear the brace for the required 23 hours a day, and by the time I was 11 I had figured out how to take it off and put it on by myself(the straps were in the back) or had friends help me. This new ability led to my brace spending more time in my school locker than on my back. As hard as wearing the brace was the next two years of recovery were just as hard because the surgery had restrictions on what types of activities I could do. I can tell you that I gained 4 inches in height from my surgery even though I still have two significant curves(after the surgery a third one developed near the base of my neck). I did wrestle on my high school wrestling team my junior and senior year. I later spent 4 years rowing on a varsity collegiate crew team. I did try military service through ROTC and after two years of ROTC was medically disqualified because of my spinal fusion - the rods were the issue. I do know that if your son is interested in the service he can try and get a senator to right him an exemption. For years after the surgery I could feel the weather change or knew a day or two in advance that a storm was coming because my back would ache. Today I am still very active and do have to deal with some lower back pain. After spending years with the lower third of my back used for all my flexibility it has started to ache in the mornings. I credit my surgeon for doing such a great job that I have had no issues to date, and because of that I canít say whether or not I regret not wearing my brace. I know that this post doesnít answer any particular question but I hope that you can at least let your son know that other boys his age have gone through this and come out the other side ok. If you or your son had questions about what is was like being a boy with scoliosis pleas feel free to ask. I know that one of my biggest struggles was that it seemed like the only other people I had heard of with scoliosis were girls and for a adolescent boy that is a big deal. Best of luck.

Hello, I'm a male who had Harrington Rod surgery in 1977 as a 17 year old. (note: Harrington Rod procedure was to fuse the thoracic vertebra and insert an 18 inch stainless still bar. Pretty barbaric by today's standards.)

I do understand what your son is going through. I was in to sports and wanted a military career. It is just one of those life's lessons that you don't always have things they way you want them. Just like anybody who encounters some type of adversity, I think scoliosis made me stronger mentally even as it made my weaker physically.

I have to admit, I have never met another male who had surgery for scoliosis. I've met a few females who did. I've spotted plenty of males who have minor scoliosis. When you have a bad case you get a sharp eye for seeing it in others.

My 14 year old son is diagnosed with the disease now. I think it bothers me more than it does him. It's not that big a deal to him since "dad" has it. I think he is more worried about heart disease or other more common illnesses.

Next month it will be my 27th aniversary of the surgery. I can say that I have lived a very normal life so far. Once "I" got over it, dating and other young adult activities were as easy for me as anybody else. My wife-to-be picked me out of a crowded classroom because I had such good posture. Of course she didn't know an 18 inch steel bar made me sit so straight.

Last year I saw a young adult girl who had a double major curve that had not been surgically corrected. It was one of the most tramatic events of my life. She had a beautiful face and intelligent eyes and a life expectancy probably in months.

I thank God constantly that I was born after the surgery came into existance and that my parents loved me enough to pay the money to have it done. One month on my back and 9.5 months in a body cast were a small price to pay.

And to tell you the truth, I think my sports damaged knees and allergies have been a bigger pain in life than scoliosis.

My advice is the same that I plan to do with my son. I'll stand by his side and support him for the duration. I am not going fuss at him about braces etc. Parental love and understanding is what he really needs. He will have to prove himself a man without having to do it on a battlefield.

I'm sure you guys dont care. Mianly since I'm not a guy. I'm 15 year old girl with scoliosis. I never wore a brace, but i went straight to surgery. I was diagnosed two months before my surgery degree was 43 and at surgery date 57. I had spinal fusion. I think of myself as a guy and that is why I'm posting. I play football, basketball, and soccer. I play regular tackle football for my high school. My doctor does not approve but it is something I love and I was not willing to give it up. I also play soccer (field, indoor, and coed-competive league). Almost all my close friends are guys and none of them have ever had a problem with me having scoliosis manily because I never let it get in my way. I know some of your sons do not have that option, but I would like to say that even if I had the option of going into a brace I wouldn't have done it. I would have gone straight for the surgery. I having metal rods in your back is not all that restricting or even different. I can do anything any of my friends can do. I know alot of people who have had the surgery though and use it as a excuse. they never challenge what they can and can't do. I was playing basketball after 3 months of my surgery, running the mile in 7 and half minuites after 8 months, but I worked at everything. I never gave myself the chance to rethink what I was going to do other wise I probably wouldn't have done it and would be a All-State and All-Region Soccer player or have a couple of player of the weeks in football and basketball. I even have MVP trophies from games, where my quick thinking and not rethinking got me them. So no one will probably read past the first sentence. since I'm a girl. I just thought I'd say my opnion.
any questions email me at : Alleycat017@hotmail.com

No problem hearing from a female. It is really good to hear how good the medical technology is now.
I think regardless how you get an injury that you should try to power through it. My doctor actually pushed me. I was doing factory work a couple of years after surgery. 25 years later I realize it was not a good thing to do but everything has worked out. Of course all of us a just one car wreck away from dealing with painfull problems.
I play golf pretty well at age 44. I can consistently drive 280 yards with old fashion steel clubs.
I doubt more than 3 out of the hundreds of people I have known over the years even figured out I had a disability. All of them had something wrong to so they knew what to look for.
The other thing I wrote is oriented towards males. Males do have pressure put on them to be very physical so males can be mentally fragile when disabled.
Good to hear of a young lady with a great attitude and I wish you the best.

Troubled son

I am new to this site which I stumbled accross while searching on Scoliosis. I read your story about your son, and I too can see your problelm. I have a now 16 year old son who was diagnosed with scoliosis at the age of 12. When diagnosed he was at about 30 degrees, he was fitted for a brace. I felt just horrible, how could this have gotten by me? How did I not catch this? The guilt was overwhelming. As soon as we got the brace home, he refused to wear it. The fight was on. He was so active, every sport you could think of. We also live in the country where he rides horse on a daily basis, but couldn't ride with his brace on. So it sat and collected dust. Him and I swam 4 times a week for about 6 months (great for my figure, but not impressive for him). Over the next 3 years I researched every book, web site, library, doctor possible to find some clue, cure, miracle. We found a couple of things that we kept on trying faithfully, but all had empty promises. Finally in March of 2003, he started to get lazy. Now this could just be a 15 year old, but I was getting concerned. His appetite went down (not like a normal teenage boy), he seemed to be in more pain with his back all the time. So I made another appointment with the local children's hospital. I did alot of research again on this orthopedic doctor we were going to see. In April of 2003 his scoliosis had progressed to 47 degrees. The doctor wanted him back in the fall to keep rechecking him. So we returned in November of 2003, only to find that my son had gone through a huge growing spirt in the last 8 months and his curve has now progressed dramaticly to 72 degrees. The surgeon sat us down and explained that surgery was the only course of action now. The scoliosis is progressing so quickly that if he should reach 100,we don't want to know the answer. Since November we have been 150 miles in and out of the city weekly to have many many test done. My son (now 16) has been a changed boy. His attitude stinks, his disposition towards life is..........I am going to live and live now before this surgery, just in case I can't after. Now I agree that that doesn't sound like a bad thing, except everytime he leaves the house I am scared. Sometimes the phone rings with news that he is in the local hospital, getting stitches, broken arm, broken leg. He is taking chances way beyond his means and hurting himself each time. I am to the point now where I would just like the surgery done and over with so then I know he is at home with me and safe. I realize he must be scared and of course we have talked and talked but it seems like I am the one talking not listening cause he has nothing to say. He keeps saying he is fine, don't worry mom, you worry too much!!!!!!! Isn't that my job? I have read alot of stories on this forum and like you say alot are of girls, but boys just seem to want to keep everything bottled up inside. Sorry I have been going on so long, but it's nice to be able to talk and maybe someone is listening
BB.

BB - Welcome to the board. My children with scoliosis have different situations, but, when I read your post, I could follow your emotional battles going on. It is very hard to give your teenager the freedom they need, without being so worried about their every move. Add to the normal teenage issues, his scoliosis and the pending surgery must be a challenge, at best. Surgery should never be taken lightly, however, there are ways to get through the surgery as smoothly as possible. Maybe being consistant with him and making sure he understands your side (as much as a teenager will listen) will help you feel better. Do you have a surgery date scheduled? Is his surgeon well experienced in scoliosis surgery? Will the procedure be done at a children's hospital? Feel free to email me or post here. Having an outlet for YOU to share your feelings helps a lot. My email is boulderfam@hotmail.com

Hello BB,
I would love to speak to your son. I am 16 myself, but I am a female. I understand it that your son might not want to talk to me or you might not want him talking to me. But I had scoliosis surgery a couple of years ago my curve them was only 58, i think, and was causing me no pain. I would love to talk to your son about what would happen. I myself play all sports football, basketball, soccer, and I'm trying out hockey. I loved to horseback ride. I still get to play the sports I love and horse back ride a little. I play soccer and basketball for my high school and I will try out for wide receiver this may for my high school. I play hockey on a local club team. I live a normal life more then I could ask for. Actually I live my life better then most. I understand what your son is going through because I kind of go through it to. I live my life to its fullest, and I have gotten hurt doing that, dislocated knee, slight acl tear, dislocated sholders, sprained wrist, multiple fingers broken. But I have never regreted what I have done. Well, I would love it if you or your son would email me at Alleycat017@hotmail.com . Thank you, -Ali

Bedson,
I know it is frustrating being a parent and dealing with this. I've had to deal with it as a teenager and as a parent.
From my view I would just provide him the love and support that a parent can provide. Distractions from the disease would be better than concentrating on it. I'm from the school of thought that you either have surgery or do nothing. When teenagers go through dangerous activity they are probably just trying to distract themselves. I am trying to concentrate more on just providing the normal teenager support (gradually treating them as equal adults instead of possessions).
I was the youngest of 4 children and didn't get all the attention even though I had severe scoliosis. Unfortunately my father was a type of fundementalist and thought God was punishing me. I would advise against such thoughts.
Just remember this challenge is really you child's and not yours. You are in a supporting role only. Don't accidently push your child away by trying to do too much.

SanD,
I don't have a child with scoliosis, but I am a male who has scoliosis. I was diagnosed at age 13 (I am 44 now), and fitted with a Milwaukee brace.

Like your sons, I hated that brace. I was active in wrestling, and I was very self conscious about wearing the brace. So I rebeled. No matter what my parents told me, I would look for any opportunity to take the brace off. It was hard on my parents, especially my Mom.

Unfortunately, I don't know any magic words that you can use to convince your sons of the importance of wearing the brace. The only thing I can offer is my personal experience. If I could back the clock, I would have strapped that brace on as tightly as possible and adhered to the 23 hours a day.

In hindsight, the brace was working despite my attempts to not wear it. For about two years, my curves were perfectly stable. Because they had not improved, I used this as a reason to become even less deligent. By the time I was 17, I quit wearing it completely.

Now I have lived a fairly normal life to this point. However, my curves are starting to progress. Consequently, I am now likely to face surgery over the next two years. I also have lived with curves that I don't like my entire adult life.